Sunday, August 15
Don called me from the SF Train depot. He and Jessica had run
into heavy traffic on the Bay Bridge due to an accident. Since
it was past noon, he urged me to go to the pool party at Nathan's
without him. I said I had a better idea. I would drive up to
pick him up. I would get there before the next train south would
leave, which was at 1:45. Better yet, we'd get to spend the time
on the ride home together. After making sure that I wouldn't
be missing out on any part of the party, he agreed.
When I arrived, he was on the phone wtih Stewart. He said good-bye,
then we got in the car. I wanted to call Steve to let him know
we were on our way, so I asked Don for his cell phone. He looked
through his backpack and couldn't find it. Thinking he might have
left it in the train depot, he went back to look for it there.
While he was gone, I also looked through his backpack. Indeed, the
cell phone was not in its side pocket, where he put it before he
left for Oakland. However, on searching through the central pocket,
I did find the phone, wedged between and under several layers of papers.
Then I went looking for Don. I found him on the train platform. He
was quite upset that he might have lost Jim's phone and very
relieved that I had found it.
When we got back in the car, he said, "This is typical of the level
of panic that always seems to be just below the surface."
As we drove to Mountain View, I told him how much I had missed him
Saturday night. "I was just driving to Safeway," I said, "and I
reached out my hand to the seat next to me, and there was no one
there."
"I feel the same way," he said. "What's in Oakland that's
so important? What's more important than spending the night
with you?"
"Yeah," I said. "I guess it's love after all."
"Scarey, isn't it? But nice, too."
"So, you were all alone last night?"
"No, Annie was with me."
"What?!" I said in mock-horror. "You spent the night with
a woman? Get out!"
He laughed.
"Actually," I said, "I figured that was going to happen."
"I cleared off a place for her on the couch."
"Wow. You really went the extra mile. Did you get any sleep?
Or could you feel her little love tendrils snaking across the
room all night, trying to ensnare you?"
|
|
Monday, August 16
This evening, while lying in bed, we got on the subject of
Disneyland. I didn't realize how close Don's childhood home had
been to America's Favorite Fairyland. He said every time a
relative would come to visit, they would all pile into
the car and go to Disneylad. After a while, he got sick of it.
Then later, as an adult, he rediscovered it.
"It has a 50's feel to it," he said, "a very fifties version of what
the future would be like."
"Makes you wonder how ridiculous our own vision of the
future is going to look in a few years."
"Maybe we could go down there sometime."
"Do they have Space Mountain? I like that."
"Me, too. I'm an E-ticket kinda guy."
"I hear they do Gay Day. Then even waiting in line an E-ticket."
"Yeah. We could stay at my father's house."
"That'ld be interesting," I said.
"I've never really met or spoken with your father."
"Me neither," he said.
|
|
Tuesday, August 17
We went to the postoffice together this morning before I went
to work. Don tries to keep his correspondence up with folks
who have sent him good wishes and cards.
On our way back to the car, he said, "You may have noticed my
keepers aren't hovering around." "Keepers" and "minders" are
how he referred to the people who were charged with looking after
him immediately after his discharge from Kentfield.
"Yes," I said, "you're pretty much on your own."
"I think I've figured out why."
"Why?" We had reached the car and were about to get in.
"They know they can't save me."
His candidness took me aback. "That's... very astute," I said.
|
|
Wednesday, August 18
Dr. Frainkel cancelled today's meeting and rescheduled it for
next week. I don't think I can get off work again so soon, but
I really would like to be there when Don talks with him. Don
is forgetting a lot of the details of his history and treatment.
We met with Dr. Peterson for the second time this afternoon.
Irena did the preliminary stuff: weight, height (do they really expect
it to change?), blood pressure, temperature, and pulse.
Then she asked Don if he's had any recent MRIs. He said, "No."
She moved us to another room then, and Dr. Peterson entered with
Deborah and an intern whose name I did not get.
Dr. Peterson: Have you noticed any side effects of the radiation
therapy?
Don: I have a constant low-level fatigue. There are times during
the day that I could lay down and sleep, but I don't. I self-medicate
with lattes.
P: Are you getting exercise?
D: Well, walking, running for buses.
P (to Lou): So, you're not driving him? (to Don:)
How long does it usually take you to get to and from Stanford?
D: About two hours.
It once took Don five hours, round-trip. He has since found more
efficient bus connections. However, I still have doubts that he
fully understands the bus schedule, or that a bus route usually
runs on both sides of the street.
P: So, it's a major part of your day. Are there any other symptoms?
D: I feel drugged. There's this visual-perceptual thing.
It was disturbing at first. It's almost as if I'm processing
visual input differently now.
P: But it has been this way since the hemorrhage?
D: No. Only since the surgery and starting the Thalidomide.
My review of the journal indicates that he was experiencing
presque-vu well before he started taking Thalidomide.
P: So, you have started the Thalidomide. What dose?
D: I started at 300 mg a day.
Lou: No, you started at 200 mg a day.
D: That's right. I'm at 300 mg now, and it'll up to 400 mg on Monday.
P: Are you going to see Dr. Prados again?
D: We don't have another meeting scheduled.
P: I'm a little surprised at that, since he's running the trial.
D: I'm not really on the trial. He prescribed the Thalidomide,
but the protocol keeps upping the dosage. I don't want to take
more than I can take at night, at bedtime.
P: Are you still on Dilantin?
D: Yes.
P: Off Decadron?
D: Yes. Right after I started radiation, I was having headaches
and nausea, probably due to swelling. But we went out and bought
a wedge-shapped pillow that keeps my head elevated - less than a
foot, but still elevated. Since then, I've had no headaches, no
nausea. I haven't taken any pain medication for a long time.
P: Will you be taking Thalidomide after the radiation therapy
is over?
D: I asked Dr. Prados's nurse about that. She said the protocol
called for it.
P: Do you have any other issues?
D: What do you know about phenyl butyrate?
P: It's a medication that more or less tells the tumor cells to
grow up and start dividing, to start behaving like normal cells.
D: I've been telling them that, too!
P: UCSF was running a study on it. I think they've closed the
study, though. I don't know if they did that because they filled
their enrollment or they found it ineffective. I think the
Thalidomide is a good idea.
D: Do you know about any interactions with Dilantin?
P: Some things, we don't know how they'll interact. I don't know
about Thalidomide. I would like to have a blood level drawn
to check your Dilantin level.
D: Someone suggested that the visual-perceptual thing might be the
temporal lobe acting up.
P: Is it episodic of continuous?
D: I don't notice it at home, around familiar, safe surroundings.
Otherwise, elsewhere, it's continuous.
P: When does the radiation therapy end?
Lou: The last day is September 9th.
P: We'll do an MRI scan a month after radiation ends, so I'd like
it done in early October, the first week. I also think Dr. Prados
should see you periodically. I'll mention it to him - in a friendly
way. We're colleagues.
Dr. Paterson then did an abbreviated neurological inventory,
including the "wiggle finger" test. Don's upper left field cut
is still quite dense. Then she asked, "Do you have any other
questions?"
"Yes," Don said. "Is 'divot' a medical term?"
He then told her the story of how Dr. Hancock had showed him
printouts of the post-surgery MRIs and had said, referring to
the resection area, "There's the divot." He told her that he
found many of Dr. Hancock's expressions humorous, and that this
one nearly had him on the floor.
P: Did you know we're related?
D: No.
P: Yes, we're husband and wife, even though I have a different
last name.
Lou: Aha. I thought you might be.
D: Lou's keeping a website, and we're keeping a kind of 'best of'
list of quotes from doctors.
L: It's a journal of our life together since Don's illness. The
notes from this meeting will be on it tomorrow.
Deborah asked for the web address, so I gave her the URL to my
home page.
P: Any other questions?
D: Do you have any sense of the mechanism of action of Thalidomide?
P: It sensitizes the tumor cells to radiation.
D: One of the physicians who's advising me has prescribed
anti-oxidants. [Keith Block's supplements could not really be
called a "prescription," but Don trusts his advice as if they
were.] Another physician, who's also giving me advice, is
Andy Wile. He says it's logical to stop anti-oxidants during
radiation treatment. But a phone call I got from his nurse
yesterday said it's okay to take them if the mechanism of treatment
isn't oxidation. I feel okay about taking them.
P: It's beyond my knowledge. Any other questions?
D: No.
L: I have a few. Did you get the pathology report?
P: Yes. It's in his folder now.
L: Good. My other question is, what are the signs of a seizure?
Don's never had one as far as we know, but I've never seen one
so I'm not sure I'd recognize it if he did.
P: It can be very mild. You're just "not there" for two or three
minutes. There can also be muscular twitching. More severe
seizures could involve falling down. In that case, you should
just clear things away from him. Do not attempt to put anything
in his mouth. You'll just get bitten. But Don doesn't seem to be
much at risk.
D: But there's not much temporal lobe left, is there? So there's
not much left for a seizure.
P: There's enough left to cause a seizure. That's why I asked
if your visual episodes were continuous or episodic. Since they're
continuous, they're not seizures. If you do have a seizure,
call and tell us about it, but
you don't need to call 911 unless it lasts more than five minutes
or there are convulsions.
The interview was over. We went out to the Neurology desk, where
the receptionist said she would contact Don's insurance to see
if they would cover the MRI in October. She would get back to
us with a date if they did.
We went to patient registration, then hematology to have the
blood drawn for the blood level checks, then to the cafeteria
for a bite to eat. Over coffee, Don said he really likes all
his doctors. This amazed him, since he had seen so many, and they
were of such different types. He would happily recommend any
of them to Commonweal's clients.
"How did you figure out Dr. Peterson was Dr. Hancock's wife?"
he asked.
"Well, I didn't really. I just thought she might be."
"What made you think so?"
"It clears up a mystery. Remember when you had your first
interview with Peterson? She said she didn't have any information
on you. I wondered why that would be the case if you had been
referred to her by Prados, like we thought."
"Yeah, that was strange."
"I don't think it was Prados, but her husband, Dr. Hancock.
When we talked to Hancock, you hadn't made up your mind about
the Thalidomide yet, and he said he'd talk to his wife 'upstairs'
about the carboplatin study. That's why halfway
through the interview, Peterson said we were 'talking at
cross purposes' when she found out you were on Thalidomide.
You can't be on Thalidomide and carboplatin, too.
She thought it was an intake interview for the study,
and we thought it was the follow-up Dr. Prados had set up."
I guess we should have been suspicious when Peterson's office
contacted us instead of waiting for us to contact them. It's
true I was working on getting an appointment, calling around
Stanford to find the right person to talk to, but I hadn't
actually gotten ahold of them yet when Don told me they'd called
him and set one up. It wasn't efficiency and well-coordinated
communications; it was a mistake.
We also talked about Don's getting a hat or some other head covering.
He doesn't mind if he loses his hair, and is even thinking of
shaving his head. But he's afraid the scars would gross people
out, and he wouldn't like people pointing or turning away in
disgust. He said Waz recommended a store in Montclaire, which
is where he gets his headgear. "But I want my own look," he
said.
"Are you thinking of getting it trade-marked?"
"Who knows? Maybe even parlayed into a movie. Who would play
you? Brad Pitt?"
"Naw," I said, "too short. Johnny Depp."
"Yeah!"
"Or that guy who played the choreographier in Love! Valor!
Compassion! He's short, too, but he's pretty."
We then went down to the radiation therapy waiting room. Don
went into the dressing area, where there's a convenient rest
room. When he came back out, there was a brief look of panic
on his face. Then he saw me and smiled and came over to sit
beside me.
"I didn't know where I was for a moment," he said, "but then
I saw you and I knew everything was all right."
We had no luck finding a hat a Stanford Shopping Mall and
Hospital University Retirement Home. We did find one sympathetic
salesman who agreed that there is no such thing as a season for
hats, but everywhere else we were told we were too early. Hats
come in with the fall fashions in September.
We stopped by the Stanfords' Tomb on our way home. Jennifer
showed it to Don during her visit yesterday. I had to agree
it was - well, monumental. Don kept calling it "Gothic," but
it was really mock-classical, with Ionic columns along the sides,
male-headed lions in front and female-headed Sphynxes in back.
Nearby, a despondant angle was draped over a marble plinth.
"Hey, angel, lighten up!" Don called. "Old Leland's gone to
meet his maker. That's a good thing."
"Maybe she knows more about it than we do," I said. "That's
why she's crying."
"It doesn't make sense. Angels are supposed to be above that
sort of thing."
"Perhaps it's a guardian angel and she's crying because
she's out of a job."
We got back later than we meant to, but still before Davis came
to visit. We went out to eat at Hobee's, then returned to my
place to look at the photos he'd taken on his trip to Nepal,
Tibet, and Cambodia. He is a wonderful man to be around and
I hope he comes for another visit. We made plans to
go hat shopping with him in Berkeley this coming Sunday.
|
|
Thursday, August 19
When Don finishes his radiation therapy this afternoon, he will
be half-way through the treatments. This morning at breakfast,
he asked me, "So, I only take the Thalidomide on days I get
radiation treatment?"
"No," I said, "you take it every day." I didn't add, "Like
you have every day for the past three weeks." It's becoming
clear his memory is really suffering and he can't remember
things even from day to day. He left the garden hose running
all night again, and the other day I think he put clothes in
the drier that hadn't been through the washer yet. I wonder
if these memory lapses will be a permanent part of his life
from now on
or if they will disappear once the radiation stops.
|
|
Friday, August 20
This evening, I prepare an aloe-vera bubble bath for Don.
For some reason, he has been reluctant to bathe. This is
apparently a long-standing behavior. He told me once that
Jnani used to have to remind him to take a shower. He said
he found the reminders embarrassing. I suggested the
buble bath because Don was beginning to get dry skin around
his ankles. It was as good an excuse as any.
I filled the tub and lit candles in the room, trying to
recreate the intimacy of his baths in Bolinas. He had
other plans at first, turning up the lights and bringing
a sheaf of poems with him. But instead of reviewing them,
he and I chatted.
He said, "It's important to me that you know when I say I
love you, it's not for what yu do for me. And you do
a lot. But I really love you. I never would have thought
it, I certainly wasn't looking for it."
This was almost identical to the conversation we had had
in April. I thank him again. It's important to me.
Don then took a bar of soap and rubbed it over his head.
This is the usual way he washes his hair, though if I did
it on my hair I think my scalp would revolt.
"Uh-oh," Don says, looking down at the soap. The bar is
covered with hair.
I stared at the soap. "Jane said people usually feel fatigue
in the fourth or fifth week." I don't know why I thought this
was helpful. Perhaps I meant, Well, we were expecting this
to happen. But really, I wasn't. But here it was.
Don decided to wash his hair with a shampoo I suggested, rather
than continue rubbing his head with the bar of soap. As he
did, he told me he had made an appointment with Dr. Prados
on September 27th. He said Dan, Prados's receptionist, had
made an appointment to have and MRI done on the same day.
I hesitated. Had he forgotten?
"Well, that's good," I said. "Dr. Peterson wanted an MRI
after the radiation."
"She did?"
"Yes, but they weren't going to schedule it until the first
week of October. She was going to share the results with
Dr. Prados. I guess there's no need to have two done. I'm
glad it's two weeks earlier. I want to find out what's
going on in there."
"Me, too."
He finished up the bath and rinsed off using the shower
head. A lot of tiny hairs went down the drain.
|
|
Saturday, August 21
|
|